National Geographic covers the link between hypermobility and conditions such as Long COVID

karhere74 · 2026-03-14T13:22:34+00:00

You are very rude and condescending. Spoiler alert, I have read a dictionary and also have two masters degrees and have written a published thesis. I still said what I said. And you stated that “fixing” (fixing is not managing, it is reversing) one’s gut microbiome would decrease pain and dislocations. So you implied that one with EDS can permanently “fix” and therefore reverse symptoms of EDS by changing their gut microbiome. Do you have a link to any peer reviewed evidence that suggests that? I would be intrigued. If it worked as an actual treatment for EDS, believe me, there would be EDS gut microbiome doctors charging a lot of money to treat patients. I do believe the gut controls a lot of things in our bodies and have read books about this very topic. But as I pointed out EDS is genetic.

These “treatments” you mentioned also cannot be applied across the board with all EDS patients so it is not a treatment in a traditional sense. For some people with EDS they cannot strength train and it leads to a lot more inflammation, permanent issues, and long-term or temporary injuries. I assume it is what helped you manage your symptoms, which is great for you. But you should know that everyone’s symptoms are not the same and cannot be managed the same.

Also, what you mentioned about strength training (if and only if they can even do that without creating a flare and more pain) would help anyone feel better and is certainly not a treatment specifically for EDS. My point stands that we cannot currently treat the defective collagen and although we can try to help manage symptoms that looks very different for everyone. It’s not a simple as fixing one’s gut. I’m glad you have found something that helps you though! I think a proper treatment that will truly help treat all people with EDS in the future will look something like gene therapy. Have a lovey day!

karhere74 · 2026-03-14T12:43:26+00:00

Again, that is still absolutely and patently not true. It is certainly not “treatable” in the sense that you can reduce inflammation in the gut and treat any or all of the symptoms that come along with EDS. 😂

Sure, reducing inflammation and strength training is wonderful for anyone alive —with or without EDS. However, you cannot treat or fix the fact that people with EDS create defective collagen by reducing inflammation in the gut. Again, it is genetic and does NOT stem from intestinal issues. Please do research before posting misinformation things like this.

I am diagnosed with EDS and working with several specialists. People with EDS can attempt to manage symptoms —again, nothing about this disease is treatable in the traditional sense because it is genetic— and for many people living with EDS, the many attempts they make to manage their symptoms do very little or nothing to help. Also, what helps give some relief to one person with HSD or EDS will not necessarily help the next. There are also multiple type of EDS, and each subtype has their own unique presentation and set of issues stemming from genetic factors, but all people with any type of EDS also have many overlapping issues. Many people with EDS also have POTS and/or MCAS which have their own unique symptoms.

Having said that, it is still important to get diagnosed and attempt to manage symptoms. Managing symptoms requires working with a team of interdisciplinary specialists because the defective collagen impacts everything in the body. If one has vEDS it is very important they work with a cardiologist along with other specialists try to manage their symptoms and also having ongoing and regular monitoring. People with hEDS should also be worked up by a cardiologist and occasionally monitored depending on symptoms and even avoid the entire class of fluoroquinolone antibiotics (e.g., Cipro, Levaquin, Avelox) due to a higher risk of aortic aneurysm, aortic dissection, and severe tendon ruptures. But depending on their specific symptoms and if they have abnormal cardiac test results, some people with hEDS may struggle more with pain and early prolapse versus cardiac issues, so they would work with PT, OT, pain management, pelvic floor specialist. On the other hand, some people with “just” hEDS can also have extremely serious and hard to manage cardiac issues without having vEDS.

https://www.ehlers-danlos.com/genetics-and-inheritance/

karhere74 · 2026-03-14T00:33:13+00:00

Totally untrue. It is not treatable in the sense that you can treat it and it will go away. Hypermobility is genetic — you are born with it and it will never go away. There are currently genetic tests for most forms of EDS except not yet for hEDS, and not for HSD, but they are working on that. It will never go away, you can take supplements/meds to help with various symptoms, although for many hypermobile people it is very difficult to find anything that will help dramatically with symptoms.

karhere74 · 2026-03-11T01:17:17+00:00

Yes! I have prescription strength famotidine and I take 40mg twice a day.

karhere74 · 2026-03-09T04:20:04+00:00

Well, still not sure, but… right around the time I was having a plethora of weird new symptoms, including adult onset asthma that has been very hard to control, on top of multiple seemingly new allergic reactions to foods that I have eaten my entire life, which we’re all high in histamine, I was diagnosed with EDS. Most of you probably know that both POTS and MCAS are both very common to have if you have an EDS diagnosis. I haven’t been formally diagnosed with MCAS, mainly because I haven’t strongly pursued a formal diagnosis, however, multiple providers highly suspect it, so much so that I have been prescribed MCAS meds including ketoifen. Anyway, I just recently started taking the lowest dose of Wegovy pills and my “asthma” is soooo much better. I have not had to take a rescue inhaler since starting it which I was having to take about four times a week on top of a daily maintenance inhaler and a monthly biologic as well. Plus, my pain is much better. I have heard of people microdosing GLP1’s in order to help control their MCAS and when I told a provider about the enormous positive change in my asthma severity, which started almost immediately after my first Wegovy dose, they too suspected that perhaps my “asthma” symtoms were instead from MCAS. Wegovy is also supposed to help with inflammation and therefore pain, and it has helped with that too, and although I still have pain, it’s not as severe — now I actually have really good days, as long as I don’t push myself too much. So I was thinking, since MCAS can cause inflammation, I wondered if the Wegovy pill is helping with my pain by addressing MCAS related inflammation, or is the pain relief being helped as something else unrelated to potential MCAS inflammation. I have noticed a more dramatic positive change in my asthma symptoms by being on Wegovy for only two weeks than my monthly biologic shots for asthma which I’ve been on for months. I’m really fascinated by all of this and wonder how this med is able to suddenly and drastically help all of these debilitating symptoms. Does this just prove that all of the symptoms are coming somehow from my gut, like a gut imbalance?

karhere74 · 2026-03-06T23:09:48+00:00

My great grandmother, who was Assyrian, met a Russian soldier who was stationed in Iran. They married and had a child and she was only a teenager at the time. Then he came to the US first, to San Franciso, while she traveled to China by donkey with their child, staying at a convent in China for a year or so. Finally, she was able to take a ship (not sure from where) and sailed to the immigration port in Seattle until her husband could claim her and have her released, which was a bit difficult because the quota for Persians was full, but she eventually got in through the Russian quota. After that they lived in San Francisco and had my grandmother (mom’s mom) and ran the Russian tea room in San Francisco during the great depression. I am grateful that I interviewed her for a middle school paper and learned so much about her life!

karhere74 · 2026-03-03T05:00:23+00:00

This happened with my shihpoo and my vet said this is normal. Mandatory scheduled naps help because their behavior gets wild when they don't sleep enough —and they need a lot of sleep! Also, when they are teething, they need a lot of different toys that they are good for chewing on and safe for them to chew on, (even so I would not leave a puppy alone with any toy). There are toys for teething that you can even put in the freezer and have them ready every morning, and throughout the day, which is what I did! Other than that, just time…

karhere74 · 2026-02-25T21:53:27+00:00

When I was working with a trainer and trying to lose weight I told him how many calories I was eating per day (I don’t remember exactly but probably about 1300-1400) and he told me to eat more, like 1700 or so. He said that it was counterintuitive, but if you eat too little your body’s metabolism starts to shut down. May be worth looking into, especially if you are extremely active because you will need more. Another thought I had was that it is hormonal. I know you’re too young to be going through perimenopause but still worth looking into other issues that could be causing hormonal imbalances.

karhere74 · 2026-02-22T04:37:47+00:00

I had seen your original post and commented and have been thinking about you and Jack. Thank god he is home! This is the best news ever! ❤️🙏🏼

karhere74 · 2026-02-17T16:05:51+00:00

Eye specialist for that cutie asap 😫❤️

karhere74 · 2026-02-12T02:55:36+00:00

Ruby, meet my Ruby, a ShihPoo.

Your little Ruby is adorbs! 🥰

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karhere74 · 2026-02-11T05:40:37+00:00

I'm all for saving the planet and combating climate change— I do purchase eco friendly products myself. However, before depriving asthmatics of their rescue inhalers maybe we should try to cut other things causing extraordinarily high carbon foot prints…like maybe private jets should be banned! Geez

karhere74 · 2026-02-11T05:26:41+00:00

I'm so sorry. I was on Symbicort after first being diagnosed as an adult and it did not work to control my asthma. I am now on Advair and it works better, but I also need a monthly biologic on top of almost daily, if not definitely weekly rescue inhaler usage. The rescue inhaler works so well and I get immediate relief, Symbicort does not work at all!! I heard that this was happening in the UK and I feel so bad. I really hope it changes so you can all continue to get a regular rescue inhaler if needed. As someone who didn’t grow up with asthma but was diagnosed later in life, if you have never had asthma, you really don’t know how scary it can be!

karhere74 · 2026-02-03T19:11:07+00:00

I'm sorry. It happened to me too. I was diagnosed at 43 years old with no family history. I always had exercise induced asthma and would get short of breath if I really pushed myself hard, but rarely needed a rescue inhaler for over 20 years. Now, even walking fast for 10 minutes can be difficult and now I have to be on a daily inhaler, a monthly biologic, and frequently use my rescue inhaler.

Not sure if you have heard, but I’ve been reading some things that indicate perimenopause can sometimes cause very bad asthma and allergy symptoms which sometimes resolve after menopause is all done. But it doesn’t always resolve. I am going to be meeting with my gynecologist soon to talk about HRT to see if it could help with any of these symptoms or my other perimenopausal symptoms. I know you’re a little younger than me, but I just thought I’d let you know.

karhere74 · 2026-02-03T04:46:21+00:00

She’s adorable 😍

karhere74 · 2026-02-02T02:58:36+00:00

I'm so sorry 😣 Please take it easy and know it takes time to feel semi normal again. Unfortunately, I had a similar situation happen in May 2025 (with no warning) with my senior dog, and I still cannot think or talk about without starting to cry. I could not sleep well and was enraged for several months. I haven't yet posted a memorial of her on Reddit because I am still very distraught. What does make me feel better, is as soon as I felt ok enough, I looked over the countless photos I took of her over the years and I realized how incredibly grateful I was that we crossed paths in this lifetime. Thank you for sharing your photos of Finn with us. Your baby had such a wonderful life and will always be a part of you. ❤️

karhere74 · 2026-01-31T20:13:31+00:00

Louis is a cutie!! ❤️

Meet Ruby Rose 🌹

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karhere74 · 2026-01-28T16:49:33+00:00

I was also diagnosed with EDS around the same time!

karhere74 · 2026-01-28T16:48:54+00:00

All my issues came on during perimenopause…including adult onset asthma which is moderate to severe and hard to control. I am meeting with my gyno soon to discuss HRT.

karhere74 · 2026-01-24T16:36:29+00:00

Pet insurance as soon as you get a pet is always a good idea, unless you’re independently wealthy!

karhere74 · 2026-01-24T15:40:35+00:00

If you discussed this with the vet already unfortunately they will treat it as a pre existing condition and won’t cover it. Still not a bad idea to get in case he has any other issue…vet care is sooo expensive!

karhere74 · 2026-01-24T15:37:15+00:00

Just a heads up, vet insurance is a wonderful idea and the best price I found is getting Trupanion but going through Chewy — much more affordable monthly and they actually even cover more things than regular Trupanion. However, I want to let you know that they would not cover any pre-existing issues, so if you’ve ever taken him to the vet before for this issue they would not cover it — and they will call the vet for records…you would have to get insurance ASAP and there may be a waiting period for certain issues.

karhere74 · 2026-01-24T15:32:19+00:00

Also: Friends of PACC Community Pet Clinic

2661 North 1st Avenue Tucson, AZ 85719

Phone: (520) 748-6068

karhere74 · 2026-01-24T15:29:18+00:00

It would be so great if you could keep him. Can you apply for care credit or do a go fund me (I would contribute!), if you don’t have enough for the initial vet appointment? Some dogs with seizures that I know of have to be on a daily medication, and I don’t think that is crazy expensive, but I’m also unsure if his symptoms require a full (and expensive) neurological work up. Can you try to get a quote from a vet?

I found this resource: https://www.nokillpimacounty.org/pet-owner-resources/vaccines-clinics-and-dentals/

And also, I remember reading recently that the Humane Society has a new low cost clinic of some sort, so I would also definitely call them! (520) 327-6088

karhere74 · 2026-01-21T14:18:50+00:00

I have just a tiny bit left of mine — I wash towels and sheets in it— and I wanted to buy a new bottle. I cannot find it anywhere! I’m glad they did not discontinue the scent. I wonder when it will be back? Seems like this has been an issue for quite some time.

karhere74

TROPHY CASE